The difficulty of describing ME/CFS symptoms and experience

[linusbert]

true. i do not talk with the doc about diagnosis either.

but these docs have so weird practices that they say, if you have more than 2-3 symptoms over different organs, its psychological.
if they say its psychological and you deny it, its confirmed, and even more psychological.
its like asking someone did you rob a bank, and he says no, and then the judge says, he is denying it, hes guilty.
and thats how i feel when going to a doctor, not as patient who gets help, but as a crimininal who tries to plead not guilty and fights for his innocense.

the virus in the ear thing is actually a good suggestion, i have herpes on my ears , but on the outside... not sure how much is inside! maybe i should try such a course too.

 

[NameHere]

If your ENT found evidence of viral activity in/on your ears, they should have you on antivirals.

I like objective evidence. I asked my ENT: Can you prove that I have a viral re-activation inside my inner ears? He said, not without invasive means like a spinal tap, since this virus, when only active inside the inner ear, does not show up in the blood.

And I said, oh, yeah I don't wanna do that yet...

But I got a blood test for shingles anyway, both IgG and IgM, and it showed no IgM but very high IgG. Here was my blood lab result (this was, of course, before any antivirals were started):

TL;DR: My blood test showed positive for past infection but not current infection. But then, after I got the test, I learned that my ENT was correct in that this virus, when re-activated in the inner ear(s), may not be detectable in the blood and it would take more invasive tests to find the virus. I would consider something as dramatic as a spinal tap, if they were going to look for "everything" while they were in there--any disease that can show up in a tap that fits my symptoms, lets check them all. It bothers me that there has been no proof that I in fact do/did have this virus, because I am spending up to 1 year on antivirals, "testing" his theory to see if he is correct.

-------------------------------

IgM = recent or current infection
IgG = infection in the past

From my blood test:

VARICELLA ZOSTER VIRUS ANTIBODY (IGM) RESULT: <.90
Reference Range:
< 0.90 Negative
< 0.90< or = 0.90 - 1.09 Equivocal
> or = 1.10 Positive

Results from any one IgM assay should not be used as a sole determinant of a current or recent infection. Because an IgM test can yield false positive results and low levels of IgM antibody may persist for more than 12 months post infection, reliance on a single test result could be misleading. If an acute infection is suspected, consider obtaining a new specimen and submit for both IgG and IgM testing in two or more weeks.

VARICELLA ZOSTER VIRUS ANTIBODY (IGG)VARICELLA ZOSTER VIRUS ANTIBODY (IGG) RESULT: 3882.00

<135.00 Negative Antibody not detected
135.00 - 164.99 Equivocal
> or = 165.00 Positive - Antibody detected

A positive result indicates that the patient has antibody to VZV but does not differentiate between an active or past infection. The clinical diagnosis must be interpreted in conjunction with the clinical signs and symptoms of the patient. This assay reliably measures immunity due to previous infection but may not be sensitive enough to detect antibodies induced by vaccination.

 

[hapl808]

I wonder how much of the problem is lacking sufficient terminology and experience gap, and how much is the fact that people do not know this disease. If something is not talked about enough, it kind of doesn't exist and is not validated.

Only some people experience depression, but most are quite aware what does it mean and treat it seriously because it is a popular topic, almost everyone gets it even though the difference in symptoms between regular sadness of a healthy person and true depression is massive. It sounds like a matter of social awareness, people tend to follow popular opinions and be sceptical if they are not familiar with something. I feel that only when this disease will be as popular as depression, we will start to be understood properly. The smaller the group and the less media coverage, the more bias and misunderstanding and we might as well speak a different language, trying to convey how it feels to have ME/CFS. It's as if we had a hive mind and some things are registered only when specific threshold is crossed.

Even depression is poorly understand - by the population but also by medical professionals. There's a feeling that people should 'snap out of it', but we also don't really understand the causes and the 'treatments' tend to rarely outperform placebos.

The problems with MECFS is that at best, it's treated like depression. My friends who realize how seriously my health has declined - want to come visit me and support me. It's impossible to explain that visiting me will make me worse. They would think that's me 'isolating', as opposed to protecting my slivers of remaining ability. They cannot understand even that a phone call can wipe me out, even though they can hear me start to lose my voice 15 minutes in. I don't talk about PEM, but I'll say it wipes me out for a couple days; I'm sure they think that's just hyperbole.

I don't expect people to ever understand. If AI came up with a cure, still only those who experienced it would understand.

Even here - I've said numerous times that I was mild-moderate for years and I looked down on those here who were severe. I crashed multiple times a week and was nauseous 24/7 - but I still traveled and worked and had a life. I couldn't do a normal career, but I 'figured it out' and thought anyone who was in bed all day just didn't have my discipline.

Then I had a major decline right around 40 years old, and suddenly leaving the house for one doctor's appointment would wipe me out for weeks - or even permanently lower my baseline.

Now I'm 'one of those people' that I didn't understand even when I had similar symptoms.

The difference between being 99% housebound and 100% housebound is a chasm that cannot be understood, only lived.

 

[hapl808]

From a simplistic standpoint, to me the difference between MECFS and flavors of depression is this:

People with MECFS want to do all kinds of stuff, but learn how awful they feel physically after doing it so they learn to avoid those things. Or they don't learn like me and have years of crashes and being sick, but lots of encouragement from doctors because you're 'pushing through' all your issues - GI, fatigue, etc.

People with depression don't want to do anything - even the things that might temporarily make them feel physically better (like exercise, socializing). They're usually more open to trying psychiatric medications because their symptoms are perfectly described by the DSM, even if the treatments leave something to be desired.

When I read the criteria for depression, almost none of them apply to me - although I'll admit that most DSM criteria are just made up things. They don't like to be reminded that the DSM used to have its rigorous criteria for diagnosing that serious mental disorder of homosexuality. And even once they removed that, they just replaced it with 'ego-dystonic homosexuality'.

Psychosomatic gets replaced with somatic symptom disorder or whatever they're calling hysteria these days. Lots of pretty language about how it's 'real' (because otherwise how will they get paid for treating it), but we'll look back on this period of hubris in medicine with shock in the future. My guess is that we'll find viruses, TBI, and many other things cause these problems. We're the same as people viewing syphilis as punishment from the gods, as opposed to something that should be treated with antibiotics.

 

[Rufous McKinney]

that happened was I got too emotional and cried, now my head has that deep burning spicy feeling with brain fog.

something I resent, is this illness deprives me of being able to enjoy a good cry. Probably because my eyes are already a huge mess, crying is just More suffering and More Pain. So I have to "stifle" these feelings. Sweep under rug.

 

[Rufous McKinney]

I'm sure they think that's just hyperbole.

"being dramatic".....


- There is this problem that anorexia seems to exist. This gives the somatic folks something to cling to.

However, I was reading recently that they think viruses or past infections may be involved. Now I can't find whatever that was I was reading at that moment.